Connect
Is anyone dealing with CLL, Chronic Lymphoma Leukemia?
I've received radiation treatment for tonsil and throat cancer. Now the doctor wants to treat CLL with Brukinsa. Has anyone used Brukinsa? It is very expensive and comes with lots of side effects which would appear to be very life limiting. What other options are there? Is taking medication for CLL life long?
Like
Helpful
HugInterested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.
Connect
Hi Panevills
I am being treated for CLL and decided on Obinituzamab and venetoclax. There have been very few side effects and i am more than half way through treatment. While the first few infusions of Obin didn’t go well, the team quickly saw my reactions, hard to breath they stopped the treatment and restarted it slowly, after giving steroids.
Venetoclax gave me some nausea which was taken care of with Olanzapine.For the most part i have sailed into remission and am done infusions and just taking venetoclax to finish up.
The reason I decided to go with this treatment is because it can be retaken if I go out of remission which on average is supposed to be 7 years…Abbvie care looked after the cost of my treatments which i am so greatful for.
-
Like -
Helpful -
Hug
1 ReactionMy CLL was treated with Obinutuzumab and Venclexta starting 8/2024. Got through the 6 months of Obin, but had to stop Venclexta after 7 months due to severe pulmonary issues (from both medications). My caution is that if you have any underlying pulmonary issues, be aware that they could become life threatening. I was told by my Oncologist at NJH to never go back on Venclexta.
-
Like -
Helpful -
Hug
4 ReactionsThank you for the cautionary comments. My cancer of throat and mouth began with dental infections. I am not convinced I have CLL. The oncologist is pushing medication and I am resisting, as all the ones I have researched have troubling side effects. Your testimony supports my decision.
May we trust in the Lord for He knows us best. Pamela
Thank you, your comments are very helpful. My oncologist indicated CLL is no big deal and slow advancing. I am hesitating, as reports from others who have been treated all include side affects that call for more medication.
I am 83 years old and am not experiencing any other health problems - no medications up to now. I am praying over this and putting my trust in the Lord.